As you may know, I was diagnosed with respiratory onset MND at 37. Six months prior, on attending a GP appointment with an array of strange symptoms; I'd been told, "it's not MND, you're too young".
Despite this, I wasn't completely unprepared for the diagnosis when it eventually arrived. I thought I knew what MND was and what it meant. I was wrong. No amount of reading and research could have prepared me for the loss, the guilt and the shock of that moment. The unrelenting realisations kept coming; not only am I terminally ill in my thirties but I will never run again, pick my nieces up again, properly laugh again, drive again, be alone again, cycle or swim again. The list felt endless and the grief hit me in waves.
Some time into the first six months I realised I was faced with a question: What am I going to do? Be sad and bitter about the undoubtedly cruel hand life had dealt me? Or to take the most possible from whatever time I have left?
I chose to try and squeeze every last drop of life from the time available to me.
For that I needed purpose. In January of 2020 my wife Emma and I founded Stand Against MND - to make any difference we could for MND communities now, and in the future. I may not have fully understood it at the time, but I'd found that purpose.
My Stand Against MND will never end, this disease needs to be understood. Only then will the lives of the people it touches not be utterly devastated in the way that they are now. That is what our little charity exists for.
So join me, and Stand Against MND